air hunger

Familial Beriberi: Discovering Lifelong, Genetic, Thiamine Deficiency

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In 2017, at the age of 52, I had an unexpected call from my new doctor informing me “I know what’s wrong with you! Come to my office now!” Lifelong increasing chronic fatigue and untreatable Hashimoto’s thyroiditis were my chief complaints.

Past doctors prescribed high dose thyroid medication, which made me feel worse. An autoimmune diet kept me trim but provided no energy. I read adenosine triphosphate (ATP) is required for thyroid production, though ATP isn’t discussed in treatment. Baggage from Effexor and an adverse childhood were also contributors to my health.

Desperate, every relevant supplement and thyroid medication on the market, I tried. Only two were effective. GABA relaxed me, and d-ribose cured my depression 100%. I became bubbly. My personality changed, but after four weeks they both stopped working. Amour thyroid lifted my brain fog for a week. Then, I had side effects. Eventually, I would learn that I, and many members of my family, across several generations, had beriberi or thiamine deficiency. In my case, I had a defect in a key thiamine transporter that made getting sufficient thiamine from diet all but impossible. Unfortunately, I did not learn this crucial information, until I was in my fifties, after years of illness and suffering.

Women’s Issues and Unrelated Problems Begin

While my problems began decades earlier, they seemed to hit a crescendo as I hit menopause. The HRT patch relieved hot flashes, only to fuel a fruit-sized fibroid that split in half with one part covering my rectum. A GP prescribed colon therapy causing severe leg cramps and constipation. A fibroid ablation enabled normal bowel function. Afterward, ozone baths caused my bowel function to stop and I developed air hunger. An ENT said, “you don’t have sleep apnea, there’s another system in your body that is causing air hunger.” He recommends a university clinic over going to different specialists.  I pursued genetics.

Starting to connect my cognitive decline, prediabetes, and depression in my grandparents to myself, I went to the MTHFR expert that wrote the report.  Her extensive 15-page genetic/supplement report offered no results. After failed treatments from endocrinologists, functional doctors, and big-name clinics like Mercola, I took a chance on Orthomolecular Medicine.

Discovering a Familial History of Beriberi

On the day I was diagnosed with thyroid treatment failure, I found a nutrient interaction article and had a light bulb moment, I’m missing a nutrient for thyroid production. I went to the author, the late Dr. Richard Kunin, San Francisco’s legendary go-to doctor for solving mystery illnesses through nutrients. He was a pioneer in antioxidant therapies, utilizing diet, nutrient and genetic testing since the seventies.  His orthomolecular research was the first to verify the use of a mineral therapy in a drug-induced disease.

When his door flung open, I saw wisdom. A rare commodity. Here was this brilliant doctor and a poster of his early collaborator Linus Pauling, staring down at me. Dr. Pauling coined the term orthomolecular meaning “the right molecule in the right amounts.” A doctor like this comes once in a lifetime and I handed him my three-inch binder.

A true scientist, he was able to assess my biochemical individuality, in two sessions.

In the doctor’s intake, the first clue is asking what my parents ate. They ate both Chinese and Western foods, which seemed like no big deal. After lab results, he searches through 300 genes, to find the biggest picture, the gene. Instead of trying to treat multiple gene defects with a supplement. He addresses the root cause first.

He announces, “You’re deficient in thiamine,” and gives me the SNP, called Transporter 2 (SLC19A3) which provides instructions for making a protein called the thiamine transporter, which moves thiamine into cells. Over time, the transporter dissolves.

I had thiamine and asparagine deficiency and riboflavin and glutathione borderline deficiency. The thiamine or vitamin B1 deficiency caused the other deficiencies, but he stays on point and discusses thiamine and only thiamine. He prefaces the session with a history of beriberi and birds fed white rice.  Looking back, it’s rudimentary B1 history, but as a patient stuck in the Hashimoto’s/Adrenal Fatigue paradigm for so long, my mind went blank. I remained silent, I didn’t know if I could die from it.

To make matters more confusing. I had stopped taking thiamine after an OATS showed B1 adequacy.

When he told me I can’t convert energy from food, I thought how absurd. He reminded me “the bottom line is how well you absorb the thiamine; not how much I tell you to take”. A Meyer’s Cocktail IV is an initial part of treatment. The next step is collecting data to prove the relevance of thiamine as an essential nutrient required to make energy.

When I Added Thiamine, My Body Began To Recharge

For the first time, I saw a difference in labs and body function. At 300 mg of HCL, my increasing A1C levels fell below the prediabetes range. I almost took metformin at one point, recommended by an integrative doctor. I felt the effects of B1 utilizing B6, through a lucid dream. Treating methylation since 2006, he says “B1 is the gateway to methylation.”  With before and after data, he points out B1 upregulating the folate cycling. My energy was increasing. Muscular problems resolved, elevated branched chain aminos were absorbing and TMJ and bruxism disappeared. This was just the beginning. familial beriberi - thiamine deficiency

I found the thiamine experts, Dr. Derrick Lonsdale and Dr. Chandler Marrs during my titration period. Nuances of thiamine used as a drug to make ATP are available with a detailed overview of beriberi, throughout Hormones Matter. Post to post, the doctors’ addressed every missing piece to my complex puzzle and more. They prompted me to take a closer look inside my dad’s past, one he rarely spoke of, and connections were made.

While titrating up, I had a short bout of diarrhea in the middle of the night. When I decreased the dose, I developed POTS for the first time, the room would spin 24/7 whenever I stood up. My GP referred me to the ER. I was unaware that I was having a paradox reaction. I just upped the thiamine, POTS, and diarrhea resolved.

Chronic TD is called beriberi means “I can’t, I can’t” in Singhalese. The problem is Chinese typically under 80, have never heard of beriberi, and in the US, beriberi is known but assigned as a disease that does not exist anymore or a condition only seen in alcoholics and bariatric patients. Genetic beriberi is passed through families, causing the inability to absorb thiamine from foods.

Beriberi In Two Families Going Back Three Generations

My family history revealed apparent genetics expressing as neuropsychiatric disorders and other conditions that appeared unrelated. Thiamine deficiency (TD) is not easily identified, due to its polysymptomatic nature. Besides the brain, the heart, muscle skeletal, digestive system, and autonomic nervous systems (ANS) need thiamine to function.

My maternal side lived in prosperity and ate a traditional Chinese diet and tropical delicacies. There were 7 members, including my grandfather that had Alzheimer’s (AD) and one family member had Parkinson’s. My grandmother had TD from kidney dialysis. There was TD in AIDS. Untreated hyperthyroidism resulted in cardiac failure mortality at 58. An alcoholic uncle had deficits, anxiety, cancer, and AD. An anorexic cousin refuses whole meals, develops a damaged digestive tract, severe IBS-C, chemical sensitivities, and major depressive disorder.

My paternal side lived in poverty. White rice was a diet staple. There was an aunt that died from child mortality in China from starvation.

After migrating to the US, food scarcity persisted. My grandfather had obesity and type 2 diabetes. My grandmother had sadness after her husband sold their daughter’s papers in China, never to see them again. At 61, my 4’10” grandmother fell over and died from beriberi.

Her wake was the first time my dad went to a restaurant at age 16. He often licked food and preserved it for later. Falsely accused of stealing, the detention center fed him regular meals. Five siblings had short stature and high IQs. His Chinese brother pictured right, was saved by the U.S. Army from malnutrition and assigned to be the radar instructor. There was bullying, anger, and irritation in the three boys. One, a bar owner exhibited extreme behavior like bringing a gun over a trivial conflict that would leave in-laws aghast.

Ocular diseases, restless leg syndrome, circadian rhythm disorder, cancer, some OCD and hypermobility, and osteoporosis appear. There was TD from chemotherapy. Two aunts left behind in China lived to be centurions and a daughter has fibromyalgia, depression, and other deficits.

Connect the lineage with a pregnancy gone wrong.

Genetics and a Traumatic Pregnancy Sets the Stage for Life

Pregnancy, a hypermetabolic state, requires sufficient thiamine for the development of a healthy child. My mom, a robust woman, was overmedicated and bedridden for a month post-pregnancy. She recovered but my brother was permanently disabled. My brother was born with uncontrollable hyperactivity and oppositional disorder. Our theory was his oxygen supply was cut off to his brain, but it was thiamine deficiency.

Two years later I was born. As a young child, I was hypoactive and didn’t move much. In grade school hearing loss was detected. Early memories included some clumsiness and not having the strength to swing on monkey bars like other children. My first feelings of frustration were over homework, especially math. My overall health waxed and waned and would not draw attention until high school when tiredness, poor memory and learning disabilities appeared. I was bullied by my older brother.

Nine years later my younger brother was born, bruxism as a baby, was his first sign of thiamine deficiency.

The next generation, symptoms of thiamine deficiency show in a gifted child.

Neurological deficits ranging from severe to minor were a sign of impaired methylation since birth.
My mom’s prenatal diet was traditional and American, and we were bottle-fed. This was in the ’60s when women were weaned off breastfeeding.

Now connect the genetics, the pregnancy and untreated thiamine deficiency in a parent and sibling.

A Genius Mind Uses More Energy and Requires More Thiamine

My dad invented the on-line TV guide in the eighties. In a constant state of fight-or-flight, working through the middle of the night on patents, sugary snacks were comfort foods to compensate for early years of food deprivation. The “night owl” term we used was circadian rhythm dysfunction. Thiamine is an overlooked nutrient required for sleep and the breakdown of cortisol.

When my brother’s hyperactivity was unmanageable, breaking things, beating the ADD out of my brother was habitual. A dysfunctional limbic system causes knee-jerk reactions to uncontrollable rage. I just learned that my seemingly nice uncle, an alcoholic, frequently tried to beat the homosexuality out of his young child.

A psychologist thought violence only happens in alcoholics. I think this limited view needs to be updated to include excess processed food intake. I remember “children should be seen and not heard” commercials as a child when hitting and spanking was more accepted.

In 1983, Dr. Kunin cited Dr. Lonsdale’s research that describes the B vitamin link with violence in Mega Nutrition for Women, “patients whose violent behavior was inexplicable by conventional medical diagnosis were found to be deficient in one or more B vitamins, notably B1, B3, and B6”.

During the Covid-19 shutdown, I thought of TD when incidences of abuse spiked, homelessness and random violence spread, and middle-class families now become dependent on food banks.

Poor Health After Antibiotics

As a young teen, I lost my glow, I looked tired, and my skin had a jaundiced yellow-greenish tint. In high school, after a round of tetracycline for transient acne, I was never the same. My metabolism stopped and I gained 40 lbs. I also have leptin deficiency and so I am always hungry. Napping after school was an everyday event. My limited thyroid test given showed normal thyroid-stimulating hormone (TSH). I was also constipated but didn’t know it until middle-aged after I was diagnosed with Hashimoto’s. In my 20’s I took antibiotics for chronic strep throat. Uninterested in nutrient dense foods, I subscribed to carb loading and high-intensity aerobic activity, the trend of the day.

Changes in My 30’s and the Promise of Modern Medicine

When my dad had side effects from sleep medication, he did his research, bought supplements for every system in the body, and stopped going to doctors. He got the family off of rice and put us on B vitamins. Uneducated in vitamins, I gave up on them too soon. I wasn’t taking enough! My mom’s acupuncturist treated my ADD, but I strayed when a well-meaning friend steered me towards pharmacology, and I took Effexor. The damage showed up over the next decade when increased nervous system and mitochondrial dysfunction begin.

Loud bar music in the back of my unit initiated chronic insomnia in my forties. I had open mouth breathing. Elevated cortisol and night sweats woke me at least 8 times a night. If I was mad, I’d have an instant hot flash and sizzle like a red bull. I lost my sex drive. After quitting Effexor, elevated thyroid TBO antibodies appeared. Later diagnosed with sensorineural hearing loss, the psychiatrist prescribed sound therapy but the condition isn’t curable.

Musculature problems began, I had an unrelenting frozen shoulder from a gym accident, and at one point, I had ataxia and couldn’t walk straight. After a trip, while in Hurricane Ivan, I was unable to walk for a month with ataxia. I once met an advanced multiple sclerosis patient, that experienced the exact same symptom from Ivan. The cause was thiamine deficiency in the cerebellum, the part of the brain that controls movement and walking.

For work, I illustrated 300 skylines from around the world and market them on Etsy. My fine motor skills and artistry remain superior, but my spatial organization was nonexistent. I was very messy. Taking GABA hampered work stress, but I couldn’t cycle it from thiamine deficiency. Managing inventory and college students wore me out. One told me “You can’t retain what I tell you”.  Finding my car in large parking lots was often challenging. The hippocampus circuitry requires thiamine for short-term memory function.

Orthomolecular psychiatry has proven to treat and manage these types of disorders with nutrients and diet, as the first line of defense. There was no need for antidepressants.

After My Diagnosis, I Learned My Parents Were Already Taking Thiamine

When I told my dad about my thiamine deficiency, he pulled out a bottle of thiamine labeled anti-beriberi. He was taking B1 for cardiac support. The heart and brain consume a vast amount of energy and require thiamine to meet the demand. My mom took benfotiamine successfully for shingles, a neuropathic pain.

When I told my original acupuncturist, about my diagnosis he said, “I already know you have beriberi, just take B vitamins and lots of them. You don’t need my herbs.” He had been treating me for dysautonomia, twenty years before I developed POTS. I detested the point because his needling pressure hurt. No questions asked; he needles points by observation and pulse, Western characterization in diseases have no significance.

Part of the treatment for dysautonomia is a needle to the center of the philtrum, this point prevents fainting. Another needle is inserted into the center of the forehead and one on top of the head for balance. Traditional Chinese Medicine (TCM) healers identify liver and lung channels weakness two decades before western medicine.

The New Doctor Damaged My Health In Only Eight Months

Twenty nineteen was a bad year. Dr. Kunin sees Vitamin C deficiency and signs of anemia and then retired. I stopped getting IVs. I would still nap after taking them. My trusted acupuncturist, also a nutritionist moved. I began dry coughing a lot, which later I learned was a sign of TD. Then I met the worst doctor ever.

I showed her, Thiamine Deficiency, Dysautonomia, and High Calorie Malnutrition and she handed it back to me and said “Oh, another patient brought this in the office.” I interviewed another doctor and told him I have TD and he replied with, “what’s your point!” and referred me to a doctor out of state.

I settled on the first doctor, and everything started wrong. She put me on a high-dose thyroid medication without titrating, and Low Dose Naltrexone (LDN), which gave me a stomachache. She wanted me back on LDN after I told her I had side effects. She recommends NAD instead of Meyer’s Cocktails which includes thiamine.

By the time I realized I was in a hyperthyroid state, the damage had begun. A cascade of beriberi symptoms begins. When one symptom would go away, another would begin. The neuropathy was more long-term. I had resting tachycardia, lactic acidosis after five days of yoga stretch that caused feet neuropathy and then trigger finger. All the doctor could say was “I had candida overgrowth”.  The cause of candida was that I had a weakened immune system from TD. I watched videos on lactic acidosis to explain it to her.

When I saw an eleven year old’s homework on glycolysis it made me wonder how much doctors remember from medical school.” I tested the doctor and asked her “What does pyruvate convert to?” She answered incorrectly.

I was developing non-alcoholic Wernicke’s encephalopathy (WE), acute short-term memory loss. I almost walked out of a restaurant thinking I paid the bill. I couldn’t remember putting a credit card back in my wallet and arguing with the clerk after she had handed it back to me. Once I read, “if you think you’re deficient in thiamine, get an IV right away.” After a series of Myers Cocktails with phosphatidylcholine, the progression stopped.

Another doctor got me off the thyroid meds, yet wet and dry beriberi symptoms continued. My left-hand lost circulation and turned hard and purple. The back of my neck hardened and my backside turned into butter. I had unintentional weight loss and my hand reflexes slowed. My minerals were becoming unbalanced. I contacted a refeeding syndrome clinic, for a consult, but was turned away because I wasn’t anorexic. A few months later I traveled to Hawaii and made a mistake.

Orthomolecular Medicine Rescues Me Again

Accidentally packing thiamine HCL instead of TTFD, the HCL initiated my paradox reaction and I had diarrhea several times the first night. Every day I napped from the sun’s UV rays. Excruciating muscle cramps sent me to Dr. Pritam Tapryal, Honolulu’s IV doctor specializing in chronic fatigue syndrome. Thiamine handouts, a stockpile of capsules and vials of B1 were waiting for me.

He calculates that I needed 600 mg of IV thiamine based on the length of time I had been feeling unwell. With an iron load before the second IV, I felt a surge of energy – I got ATP! My vagus nerve stimulated peristalsis and excess fermentation stuck in my body for three months finally released. Elevated liver enzyme activity and low blood pressure normalized.  Afterward, I found a doctor willing to provide high dose thiamine therapy at home.

I went back to the doctor that said “what’s your point” when I told him I had thiamine deficiency and requested 600 mg of parenteral B1 instead of 100 mg. A bit taken back, he shows compassion and custom orders 500 mg of B1 in a Myers Cocktail, after I explained my recent experience. The IV manager thought I was an ICU patient, but I wasn’t. It was the dose I felt best on.

High Dose IV Thiamine Therapy: From  A Patient’s Perspective

A series of high-dose thiamine (HDT) IV treatments, turned into an epigenetic treatment going on two years and two months. I’ve taken 100,000 mg of parental thiamine to this date. Infusions continued to sustain therapeutic effects and increased thyroid production. Unknown cause of malabsorption required ongoing infusions. Resolved through extensive pre-and post-labs.

I self-directed my treatment and gauged myself. I found thiamine articles from all over the world, but high-dose thiamine information was limited to WE treatment only. I received no medical advice on thiamine therapy from allopathic doctors that had clinical nutrition education, or from a young orthomolecular doctor or GP. Familial beriberi - thiamine deficiency

I had two to three IVs per week the first year that included 500 mg of thiamine. The longest time without an IV was three weeks at the beginning of 2020 and eleven days at the end of 2021. Below is a 12-month summary, from a 55-year-old woman with unrecognized lifelong thiamine deficiency from a SLC19A3 gene defect.

Journal From Long Term, IV, High Dose Thiamine Therapy

My high-dose thiamine regimen began 11/21/2019. This is the Meyers Cocktail titration period:

  • 2 infusions of 200 mg of thiamine in 2 weeks in end of Nov. to Dec.
  • 5 infusions 300 mg of thiamine in 2.5 weeks Dec. to Mid Dec
  • 2 infusions 400 mg of thiamine in 2 weeks Mid Dec. to January.
  • 500 mg of thiamine 2 to 3 times a week were taken in the middle of January.

11/2019 Concerned about anaphylaxis. Only a few teeny bumps around lips developed and disappeared after the first day. Visual clarity is the first sign of improvement.

12/2020 – Foot neuropathy and trigger finger for 4 months, resolved with 7 IV’s spread out over 4.5 weeks. The IV thiamine doses were 300 mg or 200 mg. Dexa scan shows osteopenia in lower back and femur and only 3 lbs. of lean muscle mass, muscle wasting, a hallmark symptom of beriberi.

OATS test taken a day after HDT infusion – tested B1 borderline deficient. Borderline and deficient in minerals and vitamins except manganese, doctor thought something was wrong with lab.

1/2020 – Right mucosal lining was demyelinating and slightly bleeding for a month, saw glitter. Zonulin levels over 800, the doctor told me not to be concerned, but I was. Slight rectal bleeding.

An unintentional fast in cold weather caused syncope. Broke out in an intense sweat, became faint and lost appetite. Leaned against buildings every few feet to get home, no thiamine in am. Sitting on bench resolved symptoms. MCV increases to 100, normal range is up to 95.

Tested negative for panel of inborn errors of metabolism. Autoimmune panel negative except – Arthritis – equivocal, Thyroiditis- out of range, Epstein Barr – negative.

2/2020 – New formulation of phosphatidylcholine, with small amount of dextrose without B1 was a mistake.

On three-week break, nighttime driving vision had decreased. Resumed Meyer’s Cocktail after break, fatigued, fell asleep in IV chair after IV. Reduced thyroid medication from I grain a week, increased after break to 3.5 grains a week. A1C 4.8 increased to 5.2 after break.

Right quadrant of my upper teeth dropped down. Oral surgeon said “not pathogenic of disease”.

Last visit with Dr. Kunin. Concerned I looked just as depressed as when we first met. I was happy to see him, unable to express it. Continue a more DIY approach and TCM, “the Chinese have found ways to treat that western medicine has not figured out, and one day technology will be so advanced doctors won’t be necessary”.  He handed me the keys and said, “Figure it out on your own.”

3/2020 – Introduced high fat diet. Lost 3 lbs.in a week. Severe leg cramps from foot to shin. During an IV, felt leg cramping. Normal cholesterol increased from 260 to 400. Stopped diet. No B1 in fat.

4/2020 – Lowered stress from semi-retirement and resting. IBS starts to resolve for the first time at 55. Felt extreme chill one day.  Took injectables at another doctor’s office due to shut down. I took 100 mg B1 in a B complex in intramuscular (IM) with B12 to ease B1 ‘pinch’, plus IM biotin for a month.  Not as effective as HDT infusions.  Combination of B1 with complex and biotin had best results.

5/2020 – Meyer’s Cocktail and 350 mg of NAD back-to-back infusions lifted brain fog profoundly.  Able to do tasks I couldn’t perform prior. I cried with joy, my cells were not permanently damaged from past use of Effexor and antibiotics. Unable to replicate treatment. Oral Inositol reduced elevated triglycerides dramatically, then stopped working. IBS came back off and on.

6/2020 – Tested borderline low on calcium, choline, magnesium, B5, B12, Vit C, K2, zinc on a three month average. GI lab shows mal-digestion, metabolic imbalance, and dysbiosis. Stomach pain from psyllium and flax, phytobezoar build up, rash on neck since 2019 getting worse, insomnia resolved.

7/2020 – Severe anemia showing and severe muscle weakness. I couldn’t lift a 5 lb. weight. Acute memory loss, almost walked out of lab before taking the lab.  Waking up early in am in summer at 8:00.  Hemoglobin normal and then drops frequently, IV doctor sees bleeding. Ophthalmologist finds arcus build up from high cholesterol, strong arteries, and recommends latanoprost for glaucoma after field test.

8/2020 – Decreased parenteral 500 mg B1 to 300 mg to test if high dose thiamine is depleting B12. Began coughing after 7 days. Post NAD IV lab tested  B12 deficiency, causing hemoglobin and T3 deficiency.  Acupuncture treatment creates switch sensations throughout body allowing oxygen flow, heart channel under arm point pulsated – oxygen and lung channels communicate. Leg bruising – Vitamin C deficiency.  Insomnia came back when B1 parental dose decreased, never resolved fully after increasing B1.

9/2020 – ANS dysfunction – uncontrollable body flipping in bed two nights in a row, movements like a fish out of water.  Resumed 500 mg of prenatal B1 after two weeks at 300 mg. Ophthalmologist said “you look more alert”, compared to two months ago. Started IM Mic-B and hydroxocobalamin, 5 days a week. IBS-C decreased with B12 IM. Coughing on Lipothiamine, switched permanently to Allithiamine, cough resolved. Normal zonulin levels return, reduced gut inflammation. GI didn’t order endoscopy after I told him something hit my stomach when walking and had rectal bleeding. He wrote IBS on notes. Stopped EDTA IVs for cadmium after a few treatments, when urine began foaming.

10/2020 – Latent deficiencies appear: B12, CoQ10 malabsorption. B1 not absorbing. Vitamin C deficiency appears, lifelong subclinical scurvy, bleeding gums, gingivitis, pilaris keratosis, bruising, poor iron absorption, rectal bleeding, low tyrosine.  Sick people are low in B vitamins and Vitamin C.  Repeated thiamine depletions cause heavy Vitamin C deficiency in lung, kidney, thymus, and liver.

Tested positive for Intrinsic Factor AB, Pernicious Anemia (PA).  Hematologist defensive when I asked him if TD can cause anemia, cancelled next appt., told me to see a GI. Doctors booked from Covid-19 delays.

Oral surgeon cleared teeth shifting. Orthodontist ordered aligners, short teeth roots in scan.

Trialed compounded thiamine cream from Lee Silsby pharmacy and replaced TTFD.

11/2020 – Stomach pain increasing after meal. Twelve days in, I thought I was going blind. The thiamine cream wasn’t absorbing. Indoor and night vision blurry. Back to TTFD and Myers Cocktail together. My vision came back, but not as clear before getting blurry. Mild paradox reaction, a bowel movement in the middle of the night.

12/2020 – Endoscopy shows chronic gastritis, h. pylori and peptic ulcers. A combination of a lack of nutrients cause ulcers, including B1.  Refused triple therapy (antibiotics and PPI). Treated with cabbage, herbals, mastic gum.  ION Panel indicated GSH and potassium deficiency, lactic acidosis (TD), ketosis, oxidative stress, transmitter deficiencies and metabolic syndrome.

Elliot Overton of EO Nutrition interprets mitochondria in battleship mode, suspects mold toxicity. Unseen mold or water damage. Incontinence and frequent urination. Second ophthalmologist told me don’t take latanoprost. MCV high still high with regular IM B12, since 10/20. With small veins and bursting arteries, it’s difficult to maintain IV’s.

In 2020, my health was like my dad’s. My hearing and vision deteriorated, I was unable to hear people speak with masks on and had difficulties focusing on conversation in noisy rooms. Gingivitis developed into periodontal disease; teeth aligners require lifetime use. My dad is deaf in one ear, and now going blind in the second eye and had the periodontal disease the same year and wears dentures.

Observations at 43,500 mg IV Thiamine After 13 Months

Intravenous therapy can target issues in ways oral thiamine cannot reach.

Improved thyroid production, A1C, insomnia, IBS and CFS, overall energy level partially improved.  Foot neuropathy and trigger finger resolved.  Cocktails with phosphatidylcholine, iron, and NAD, had increased effects, latent deficiencies appear, no nutrient depletions from high-dose thiamine.

Infection, gastritis, ulcers during treatment caused malabsorption. Reducing thiamine caused insomnia to reoccur and acute vision reduction, increased ANS dysfunction caused temporary uncontrollable body movements.  Increased dose of 300 mg to 500 mg of B1 resolved uncontrollable body movements and regained vision.

I saw one patient vomit, and a patient have nausea during 300 mg B1 Meyers Cocktail.

ROS from unknown cause extends treatment into 2021.

High Dose Thiamine IV Therapy, Toxins, Diet, Labs, and Gigong

In 2021, I tapered to two IVs a week and increased the 500 mg to 600 mg mid-year. Hot flashes returned after 5 years of remission causing a three-month setback. Insomnia made me delirious and had to take naps. PEMF bio-mat calms the nervous system to assist in sleep, without it I’ll wake up a few times during the night. For over 10 years, I wake up and urinate once a night. My eyes became blurry and I walked slowly like an old lady for a short period. Daily clear phlegm wants to come out since 2020 when I eat.

In spring my bloodwork showed Stachybotrys and Aspergillus mold. I found growth on papers in a storage box against a wall with the laundry room on another side. Condensation went through the wall.

With my gut healing and IV therapy, my TBO antibodies levels reduced significantly. The increased T3 raised my steroid hormones. Reducing thyroid medication again was a real possibility. IBS-C was resolved by mega-dosing powder magnesium with fiber, B1 and B12. I once had an offer to see the world authority on IBS-C, though all I needed was a good form of high-dose magnesium. I was feeling better until I experienced unexpected setbacks.

Everything Changed With Two Major Endocrine Disruptors

Microscopic brick debris during construction flew under my windows. Debris flew inside over 50 ft. and landed everywhere, never thought my eyes and lungs could clear it. Due to an HLA-DQB1 gene defect, I’m unable to break down mycotoxins (mold).  Mold is an anti-thiamine factor and it oxidizes B1 and B12.

When inflammation started to calm down, my hallway went under remodeling, and material debris and paint fumes went under my door. The chemicals shut down my thyroid. Antibodies rose from 180 to 535. Inflammatory markers that were improving became elevated and deficient. My killer cell function, HNK1 (CD57) level was 50 and now 18.  The doctor thinks I have Lyme. I’m testing for MARCoNS, a staph infection that resides deep in the nasal passage, due to sinus inflammation from the biotoxins.

After trialing Cholestyramine for mold binding, it made me constipated. My acupuncturist gave me a two-hour treatment to undo the damage. To detox, I use an FIR infrared sauna on the mat. I’m getting an ERMI test kit to test other rooms, an air test hardly detected mold.

HDT Isn’t a Standalone Treatment

With the amount of IVs I took, I tested questionable foods. A few small gluten-free snacks put me into a comatose within 20 minutes. Less than two ounces of coffee initiated leg/foot cramping. I never had this problem a few years ago.  Removal of processed carbs is the only way I can maintain my thiamine storage.

Staying in mild ketosis, on a paleo diet is optimal for me. When I tried high-fat and vegan diets, they caused deficiencies. I have a nonfunctional gene cluster FADS1/FADS2, that requires the consumption of EPA and DHA found in seafood. Drinking concoctions of vegetables and minerals activate B vitamins throughout the day.  TD causes nitric oxide deficiency and I replete myself with nitric oxide greens.  My one kryptonite food is liver, it elevates my copper.  Using food as medicine supports my overall immune function as I recover from Chronic Inflammatory Response Syndrome.

My hydrochloric acid is deficient from TD, and I have low gastrin. I’ve taken 13,000 mg of Pepsin Betaine and feel no sensation. Apple cider vinegar doesn’t seem to work. My amino supplements aren’t absorbing.  I also have oxalates, Elliot recommends more B6 and I’ve increased molybdenum to meet my sulfur intake.

I take a blend of B1 that includes: 900 mg Allithiamine, 300 mg benfotiamine and 500 mg thiamine HCL. Over 900 mg Allithiamine and sulfur come up. Before a Meyers Cocktail, I’ll soak in magnesium salts. I’ve increased all the B’s and take them with other essential nutrients throughout the day in moderate to high doses. I require biotin intramuscularly every few weeks, otherwise my nails chip, this started last year. My transporter may be dissolving.

Utilizing Biomarkers and Managing Nutrients

Every six weeks I rotate biochem panels and adjust diet and supplements. My weaknesses this year have been lipids, omegas, aminos, and inflammatory markers. My B12 continues to pool due to suboptimal thiamine levels unable to utilize B12, so I stopped testing. I inject 35 mg of hydroxocobalamin a week, plus sublingual, and hemoglobin is always on the lowest end of normal after I had pernicious anemia. Mold is the suspect cause. I may also have scar tissue from ulcers and scurvy of the colon. The GI doctor recommends an endoscopy once every three years when there’s been a problem.

I’ve found nutrient panels reliable when B1 is extremely deficient. On two occasions my lactate tested normal. Then I had beriberi symptoms after I took the labs on the same day. This was from eating beans and walking in sun, which forced me to sleep. My citric acid markers were normal on an ION panel and I was in ketosis, but the clinician didn’t know I had POTS on the morning of the lab. This was from a three-day fast suggested by a doctor. Thiamine deficiency can worsen on a dime.

Diagnosed with TD on a SpectraCell micronutrient panel, I had long-term B1 deficiency. Normal B1 levels are misleading on my labs once there’s been intake. The Vibrant America panel showed B1 malabsorption at 35,000 mg of parenteral B1.  I’ll continue with this panel and monitor nutrients connected to B1.

My doctor’s friend offered me the two-part transketolase lab for research, but my doctor forgot to arrange the sampling. I was upset at the time, but it doesn’t matter now. I manage myself by how I feel. With Excel journaling, the more elements I add, the more clarity I receive. Observing physical changes are equally valuable to the labs.

A Revisit to Energy Medicine That Compliments Nutritional Balancing

I recently discovered group Primordial Qigong. I haven’t found any other modality that has the same restorative benefits that give energy instead of using energy. Movements connect the body, mind, and soul with the focus on living in the present. Gentle stimulation of systems and body parts creates rejuvenation from within. Who doesn’t want that?

Dysautonomia, the fainting prevention point, is taught in practice. The bank of hands faced together inverted pushed downwards from the forehead over the philtrum encourages balance. Made for masses with no resources, it only requires continuity. This is a welcoming alternative compared to the nutrient-depleting therapies, recommended by for-profit western doctors that made my health worse when they didn’t know what they were dealing with.

At 100,000 mg Of IV Thiamine – It Feels Like I’m on a Train I Can’t Get Off

Overall, the quality of my life has improved. I no longer need to lie down and sleep during the day, even if I feel tired. I’m more active in mind and body. I can sit up and read, wake up earlier, and exercise. My processing speed and speech are faster. The left side of my brain is strengthened. I did audits on my condo association to trace missing dues and one over BlueCross when many claims were unpaid. My brain fog had been too severe to do this previously.

Neuropsychiatric issues appear in less frequency. I still experience forgetfulness and minor learning impairments. Irritation is manageable. I believe some brain function is permanently damaged along with hearing loss. Considering my long-standing history, I’m pleased with the results even though it is only a partial recovery.

Since my body called out for a high dose, there’s a chance I can regress. At 11 days off the IVs, I was deficient in Co2. I don’t know if the thiamine coenzymes can function without high-dose therapy because of my genetic liability. I’m patiently waiting to see how my body changes after the toxins are eliminated and figure out how to taper down from the IVs.

Final Thoughts

Thanks to Dr. Marrs and writers on HM for elucidating thiamine awareness, I learned how to use thiamine as a drug at a time when I needed it most.

Through luck, I found nutritional clinicians that made a significant difference in my health. Educated in Dr. Lonsdale’s thiamine research, they applied his nutrient-based knowledge into their practices. Understanding that beriberi still exists today and is not an ancient scourge from yesterday, is critical.

By assimilating the genetic impact of beriberi and orthomolecular dosing, I’m regaining health in my late fifties. However, no patient should have to spend a lifetime finding a treatment based on luck. There’s no reason to it’s all here: Thiamine Deficiency, Dysautonomia and High Calorie Malnutrition, Derrick Lonsdale and Chandler Marrs; www.orthomolecularmedicine.org

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This article was published originally on February 14, 2022. 

Breathing Easy With Thiamine Pyrophosphate

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This is a strange and somewhat disgusting story about how a few B vitamins have worked better than a wide range of antifungals for chronic diarrhea and a long list of other symptoms that developed over time. In addition to chronic diarrhea, air hunger/difficulty breathing, foot drop, other classic symptoms of thiamine deficiency were present but not recognized by physicians. I discovered and have begun correcting my thiamine deficiency on my own with some success. Hopefully, the reader will see some unique solutions in the account, as I’ve had very significant degrees of success with the various treatments in the attempt to overcome this condition. For anyone else who thinks there is a better way, I’m all ears in the comment section. I’m not recommending anyone try what I did, I’m just providing an account of my situation and what I regard as some success.

Raw Veganism and My Slide Into Poor Health

When I was in college I read a recommended book called “fit for life.” It recommended a radical shift to all raw veganism. It advocated dropping meat for cashews, addressing concerns for protein adequacy with quotes such as “and if (as a result) your fingernails fall out, they will grow back in even better.” I was extremely healthy, athletic, and had everything to lose, and I did lose everything following that advice. Mind you, I wasn’t doing it to spare the animals, I just thought I’d have some crazy edge on being healthy.

At some point while on this diet, I developed chronic diarrhea. Maybe some of those fantastic raw veggies were contaminated or maybe my immune system was compromised from other possible resulting nutrient deficiencies. Whatever the reason, I was stubborn and foolishly didn’t take the obvious net result of that lifestyle choice into consideration and I got used to living with severe diarrhea. By the time I had shifted gears and started getting things like salt, heme iron, complete protein, etc., I discovered that the symptoms remained.

At the height of my illness, I would have to run to the bathroom seven times a day. I’ve had plenty of jobs where that causes a lot of problems. I finally went to the doctor because it was so bad. My stools were bright yellow, so they were submitted for a stool pathogen test. It came up negative. He made an appointment for me to see a specialist in 6 months at the earliest. I was desperate, but I took the 6 months to wait and did not try and fix the problem myself. Maybe that was a mistake, but then again, I was never loaded up with antibiotics on a whim, so who knows maybe it was a blessing.

The Progression of Thiamine Deficiency Symptoms

Diarrhea and discolored stools began 20 years ago when I began the raw vegan diet. I was on this diet for a little over two years, before I changed course and began eating meat again. Since starting the raw vegan diet, and over the course of time, either more symptoms developed, or I just became more aware of them. The symptoms included breathing difficulty or air hunger, seemingly less sweat, and very frequent urination at times. In addition, I seemed to get cold easily despite having very high concentrations of the thyroid hormone triiodothyronine (T3) on lab tests. I also have bleeding gums, very sore soles of my feel (it is almost impossible to walk on a beach covered in seashells), significant loss of visual acuity in my left eye, a pronounced sense of difficulty keeping my eyes straight when tired, and an occasional sense that my feet are dragging. My foot would occasionally drag on the ground as if I had neglected to move it properly. I feel that I have a greater sense of the right side of my body over the left. During this time, I also noticed a reduction in earwax, particularly in my left ear, a reduction in fingernail growth, at least compared to when I was in college, and I sense a dullness where either my spleen, pancreas, or stomach is. My skin was dryer, and no longer oily. Often, I would have dandruff. For a long time, I could get dizzy upon standing. Also, I realized the constant body aches I felt were always present and not the result of delayed onset muscle soreness from my regular training. I was tired all the time. People would tell me it’s healthy to sleep if I was tired, but I found I felt just as bad sleeping 12 hours as I did after sleeping 4. I could sleep 17 hours, get up to eat, and go back to sleep. It was ridiculous, not to mention I had to economically survive, so instead of sleeping all day I began working 2 and 3 jobs at a time and resolved to spend the money experimenting on supplements.

Discovering Thiamine Deficiency

In addition to the stool test for pathogens that came up negative, I got a Spectracell test to assess my vitamin status. I was beginning to believe that nutrient deficiency was involved in my illness. After all, two years of a raw vegan diet, I lacked a number of critical B vitamins. I chose a Spectracell test, as opposed to a standard blood test because it is supposed to be more accurate. The makers of Spectracell argue that standard nutrient blood tests are inaccurate because they only show what’s in your blood at the moment, whereas the Spectracell method feeds nutrients to a culture of your white blood cells and extracts nutrients one at a time. If the culture dies too early from withdrawing a nutrient, they say that you need that nutrient. My test said I needed thiamine and vitamin B5. I don’t know if the usual vegetarian deficiencies were present at any time, because I had long since thrown supplements such as methyl folate, methylcobalamin, and Albion iron in a bid to resolve the problem, none of which had any effect after extended use. My testosterone, as of 2 years ago, was at 650 ng/dL. Every blood sugar test I take at the supermarket, says I’m in the normal range, but I exercise regularly. Supermarket blood pressure readings are never high, always in the low to normal range.

Successes, Failures, and Odd Results

If you managed to make it through the symptoms section, this part should be a relief as I’ve had a lot of success, some of which helped but had to be discontinued for one reason or another. That said, I’m not advocating anything I tried here, and people should discuss things with their open-minded health professionals before trying anything.

Antifungals and Herbs

Some herbal measures of note were undecanoic acid.  This worked for the breathing but was intolerable to the GI tract. Tudca, and a particular standardized artichoke extract normalized stool color, helped tremendously with breathing, helped with energy but caused tremendously unbearable diarrhea. Turpentine mixed with olive oil taken with meals helped with breathing a little but reduced my energy and worsened diarrhea.

At one point, I took a black-market antifungal after I read how it acted on the cholesterol portion of a fungal infection and didn’t pose a threat to the healthy gut biome (if I had any left.) It helped a lot on the digestion, only as long as I took it. It didn’t help with the breathing but slowed the bowels. My stools were better formed, but for some reason, the last portion of them was still yellow. I took a meningitis dosage of fluconazole for 8 weeks and a few days after stopping it, the digestive symptoms totally returned. I tried another cycle some months later and stopped after a few weeks when it didn’t work anymore.

Probiotics

Mega-dosing probiotics helped a little. There is a site that sells powder with doses of 400 billion (compared to the 1-60 billion in stores). Acidophilus helped the most, but also aggravated the breathing problem severely. Other strains had no negative effect on my breathing. An example of a probiotic that had a semi-stabilizing effect on my digestion would be acidophilus at 1600 billion CFU’s/day. Unfortunately, it became extremely difficult to breathe when taking it. Not sure if it is the d-lactate content or the fact that some strains are histamine producers and others are histamine degraders. An example of a probiotic that didn’t cause breathing difficulty at any dose would be l-Plantarum. The manufacturer who sells these bulk probiotics describes acidophilus as a strain that produces d-lactate, and as I never developed air hunger from, say, a histamine-producing strain like thermophilus (although thermophilus never improved my digestion).  I’m more inclined to think the issue is one of d-lactate and not about histamine. That said, below is an interesting chart from the book “Fix your Gut” by John W. Brisson.

histamine modulators
Histamine modulators and degraders from: Fix Your Gut by John W. Brisson.

Probiotics stopped me from running to the bathroom several times a day, even after discontinuing them, but they weren’t a fix. I don’t take them anymore.

Digestive Enzymes

One of the biggest things to help was the digestive enzymes that I took but it took some trial and error to figure out which ones worked best and at what dose. When I took too much or the wrong ones, it worsened my GI symptoms. I tried a very high-dose amylase pill (4 x 200mg per meal) and then incorporated the full dose of lipase from the same brand. I realized that there was definitely a lack of digestive enzymes, but that I reacted poorly to protease, which is included in most enzyme products. I can’t underemphasize how helpful taking enzymes in high doses without protease has been. I’ve tried to incorporate protease on several occasions. It is available in a 400k potency strength down to around a 50k potency. After reading the success of one reviewer on Amazon, I tried to power through the bad symptoms caused by several high potency proteases, because I believed it would be effective against infection and probably a premier defense against pathogens in the bowels, but it always resulted in diarrhea, lots of slime, and eventually, I would start to see specks of blood.

Strangely, at a lower dose of protease, the outer edge of my thumb and index finger would dry up. It’s a weird reaction considering all kinds of people can take a lot of proteases without any issues. For an extended period of time, I backed down to the one brand that has 50k potency, which I can tolerate somewhat, although it caused a rushed bowel sensation. Ironically, the one I’m happiest with is the strongest one I’ve taken, as it doesn’t seem to cause any of the side effects. The problem with tolerating a protease might be like what the protease-producing fungi were fed to produce protease in response to. I don’t believe trace elements of fungus are causing a problem in widely circulated brands in my case, as I can tolerate fungal lipase and amylase with no problems, but a probiotic protease cultured to digest wheat and milk proteins caused big problems for me. The high potency brand of protease I’m taking is tasteless, reduces bloating, and unlike the other proteases I’ve taken, it helps digestion, particularly with stool formation.

Navigating Nutrient Repletion

I became more interested in thiamine when I took a supplement called N02, which was a bodybuilding supplement consisting of a large dose of arginine that resulted in more vasodilation and more carbohydrates going toward glycogen. It provided a very pronounced benefit for me in terms of muscle-pump/glycogen storage, but the label said: “not for those who are thiamine deficient.” While I wanted to enjoy the benefits of the supplement, or now something I like better such as citrulline peptides or a 20-gram dose of beet powder, it made me unusually sleepier, and it caused extreme dryness on the left side of my neck every time. I wondered if I had this unusual reaction because I was low in thiamine. I now attribute the complications I noticed taking “pump” products to be the result of improved circulation causing an increase of infection into my bloodstream, as the problem is greatly reduced by the high potency protease I’m taking. I had tried thiamine several times, but in pill form at 100mg doses, which may not have been enough. I began looking for a good coenzyme thiamine powder, which I found. At that time, I also found acetyl coenzyme A powder at $2000/kilo -seriously. I bought them both.

I decided to only use coenzymated B vitamins – vitamins that are in their active form used by the enzyme – after reading this study on PubMed: The vitamin B6 paradox: Supplementation with high concentrations of pyridoxine leads to decreased vitamin B6 function – PubMed (nih.gov)

Vitamin B6 is a water-soluble vitamin that functions as a coenzyme in many reactions involved in amino acid, carbohydrates and lipid metabolism. Since 2014, >50 cases of sensory neuronal pain due to vitamin B6 supplementation were reported. Up to now, the mechanism of this toxicity is enigmatic and the contribution of the various B6 vitamers to this toxicity is largely unknown. In the present study, the neurotoxicity of the different forms of vitamin B6 is tested on SHSY5Y and CaCo-2 cells. Cells were exposed to pyridoxine, pyridoxamine, pyridoxal, pyridoxal-5-phosphate or pyridoxamine-5-phosphate for 24h, after which cell viability was measured using the MTT assay. The expression of Bax and caspase-8 was tested after the 24h exposure. The effect of the vitamers on two pyridoxal-5-phosphate dependent enzymes was also tested. Pyridoxine induced cell death in a concentration-dependent way in SHSY5Y cells. The other vitamers did not affect cell viability. Pyridoxine significantly increased the expression of Bax and caspase-8. Moreover, both pyridoxal-5-phosphate dependent enzymes were inhibited by pyridoxine. In conclusion, the present study indicates that the neuropathy observed after taking a relatively high dose of vitamin B6 supplements is due to pyridoxine. The inactive form pyridoxine competitively inhibits the active pyridoxal-5′-phosphate. Consequently, symptoms of vitamin B6 supplementation are similar to those of vitamin B6 deficiency.

I honestly don’t know if complications with non-coenzymated B6 occur similarly with other non-coenzymated b vitamins. With B1, I know that we do have extracellular coenzymated thiamine circulating in our blood. So-called coenzymated B complex supplements contain an unknown mix of coenzymated B’s with a majority of those same B vitamins in their non-coenzymated forms. Some B vitamins are never, or rarely, sold purely in their coenzymated forms, such as with thiamine and B5. Thiamine pyrophosphate bulk powder is hard to get. When someone writes about how they tried thiamine pyrophosphate and it didn’t help, I’m skeptical because it sells in tiny doses and I imagine people rarely give it a fair shake in large dosing protocols. Nobody sells coenzyme A, not even a brand ironically named “Coenzyme A Technologies” which just sells a precursor pantetheine in a very small amount.

Adding Acetyl-Coenzyme A, Thiamine, and Other B Vitamins

Initially, I worked with acetyl-coenzyme A. I ended up taking an estimated 600mg transdermally several times throughout the day with great success. To do this, I would splash some water on a thin-skinned area such as my shin or forearm and pour the powder onto the wet area before rubbing it in. There is a trick to make sure that there isn’t too much water being used and to also make sure the dose doesn’t splash everywhere. I would follow that with a DMSO cream. For those of you who don’t know, DMSO supposedly drives nutrients through your skin better. There are products that claim 99% absorption when DMSO is added, whereas without it the area would eventually lose the ability to keep absorbing a targeted nutrient after a few days, and it would just evaporate. DMSO smells horrible, so much so that this procedure isn’t possible unless you use the brand that has mixed it with a rose scent, which doesn’t smell bad at all. This basically resolved the exhaustion problem I have, particularly with regards to wakefulness/motivation.

Typically, I wake up more tired than when I went to sleep, but I have to work out at 7 am. I rub this into my skin and within 20 minutes I’m totally awake. It’s not a stimulant feeling, it’s just that suddenly sleep isn’t an option and attempting to sleep becomes annoying. I’ve also benefited from this during what may have been a thiamine paradox reaction, which in my case manifested as extreme tiredness and a definite drop in mood. It has taken 1-2 doses of acetyl coenzyme A about 1 hour apart to climb out of that, which otherwise could have easily lasted 4 hours. I can’t speak as to whether this overcomes normal tiredness, as again I have otherwise abnormally extreme tiredness. Unlike caffeine though, acetyl coenzyme A is a big part of the Krebs cycle, and niacin is too inflammatory for me; even niacinamide causes my nose to get very runny and I just don’t feel like inducing a histamine reaction is a good idea. Acetyl coenzyme A gets around that. Also, I remember a book called the Ultimate Healing Guide by Donald Lepore who was administering 9 grams of B5 a day in some cases, which always made me question how effective calcium pantothenate or pantethine is. That said, I can see why people don’t sell Acetyl coenzyme A. Long story short, it has to be sealed and at the very least refrigerated.

I also began using thiamine pyrophosphate powder. I take this transdermally as well. It has profoundly improved my breathing and given me a lot more oil or moisture to my skin. I’ve noticed sporadic increases in saliva, which I regard as healthy given that I produced a lot when I was a healthy kid. I’ve noticed my workouts have improved as well. I lift weights and my sets are a lot closer together now and I have more of a muscle-pump/glycogen storage during my workout which buffers the unpleasantry of moving all that heavyweight around. I’m taking approximately 600mg 4 times a day following meals and protein shakes. I don’t take it on an empty stomach. I believe a higher dose would further improve saliva production and breathing and I am presently taking it slow getting to that higher dose.

I noticed I don’t have improved breathing if I stop taking the high potency protease and interestingly, my breathing is terrible if I take the protease without the thiamine. I’m speculating that the protease is having a huge antipathogenic effect, which may reduce hydrogen sulfide gas and possibly compromise the thiamine I’m taking. Another possibility I’ve considered is that the protease causes enough of a reduction in the pathogens that the thiamine effects can be observed and are otherwise drowned out by an overwhelming amount of histamine or whatever is causing the breathing shortage. I’ve noticed also that any drowsiness or drops in mood seemingly caused by high doses of thiamine pyrophosphate (perhaps due to improvements in circulation and which an infection is also able to take advantage of) are negated when I take the high potency protease. Thus, I would attribute those symptoms to the infection I likely have.

I’m also taking p5p, which has a kind of nerve stimulation benefit to it for me. I take 20mg sublingually every three hours. At one point early on, I couldn’t tolerate 40mg without feeling like the contents of my bowels were sliding through me (followed by diarrhea), 20 mg wasn’t a problem though. I feel the p5p is synergistic with the acetyl-coenzyme A.

I also take R5P at 50mg 4x a day with meals. Not sure it helps, but I read it helps with the coenzymation of the other B vitamins.

In total, these four B vitamins have reduced my bleeding gums to less than 2-percent of what it was. They have reduced the soreness in the bottoms of my feet, drastically improved my energy and motivation, drastically improved my breathing, and improved my athletic endurance/muscle glycogen. I noticed a pronounced reduction in the frequency of urination, earwax production has increased, particularly in the left ear where it was reduced.

Theories

I have listed some theories below with my own observations notating them. I’d like to hear other  opinions. Disagreements are definitely welcomed.

  • Was my problem a result of too much flora lost from chronic diarrhea, which led to fungal overgrowth, which led to hydrogen sulfide, which then continuously degraded my thiamine?
    • There is a book online Fix Your Gut by an author I felt has some insight that says fungal infections reduce both thiamine and b5. My Spectracell test showed I wasn’t low in anything else but those two nutrients.
  • Was the paradoxical effect from thiamine that resulted in exhaustion and a drop in mood from the improved circulation generated by an increase in nitric oxide or other means? Did this then allow the already-present fungal infection to enter the blood and cause mood problems and exhaustion?
    • I would support this theory by mentioning how taking nitric oxide supplements (i.e., citrulline peptides, beet powder standardized for nitrates) also resulted in this exhaustion as well, where it becomes difficult to keep my eyes straight. I would also support this saying that the high-potency protease I take, which I regard as a strong anti-fungal, negates that complication.
  • Is the acetyl-coenzyme A is only helping because it is circulating pathogens or their chemical excretions from my blood? I’ve been doing it for many months, and it isn’t like I’m needing less of a dose or less frequency, which I would imagine someone would see if they were addressing a deficiency.  I suppose it is possible the extra amount is needed due to possible ongoing fungal problems.
  • Was the lack of enzymes caused by an infection in this case and not by a lack of vagus nerve stimulation? Ultimately, I’d like to be producing my own enzymes and I feel being able to do so gets me closer to the cause of all this. I suspect a fungal infection can somehow offset the necessary stimulation nerves normally receive, and ultimately compromised my pancreas if it wasn’t compromised in other ways by an infection. I don’t have any sharp pains consistent with severe pancreatitis, just a reoccurring dullness in the area. I’ve tried a number of nutrients to increase nerve stimulation with no effect and imagine if there is an issue here with the vagus nerve, it is more directly caused by complications from an infection.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Dyspnea, Air Hunger, and Molecular Oxygen Consumption

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What is Dyspnea?

This is the medical term for shortness of breath. The word is derived from the Greek, dys meaning abnormal + pnein, to breathe. We are aware, of course, that we get “out of breath” when we exercise and that this is perfectly normal. We are also aware that exercise breathlessness is less acute after physical training. Dyspnea is applied to breathlessness at rest and when it is greater than expected with the degree of exertion. It is a symptom of disease. Chronic dyspnea is defined as resting shortness of breath that lasts more than one month. Most cases of dyspnea result from asthma, heart failure, myocardial ischemia (shortage of oxygen containing blood to the heart), chronic obstructive pulmonary disease, pneumonia and is even related to “psychogenic” disorders (meaning that there is no evidence of  physical disease). Associated symptoms and risk factors such as smoking, chemical exposures and medication use also need to be considered and the examination of the patient by a physician, together with laboratory studies, may lead to an obvious conclusion. However, this does not necessarily lead to appropriate treatment.

The Anaerobic Threshold

We all know, of course, that we need oxygen for life and that we die quickly without it. However, most people tend to take it for granted and have little or no interest in what we do with it or why. Heart and lung activity depend on efficient breathing to provide the continuous influx of oxygen that is delivered in the blood. The functions of both the heart and lung are controlled by a network of neurons located within the lower brainstem, the part of the brain that connects with the spinal cord. The basic rhythm of breathing is generated by these nervous mechanisms. This means, of course, that damaged mechanisms in the brain can be responsible for failure to breathe. An example of this is opioid poisoning. The common condition of sleep apnea is also an example of brainstem disease.

The use of oxygen in our cells is called oxidative respiration (also known by the technical term, redox) and refers to the complex mechanisms that yield cellular energy. This activity takes place within mitochondria that exist inside all our cells. Perhaps we can refer to this as the action of the primary engine, the engine that requires oxygen to function. If for any reason this mechanism is exhausted for lack of one or more of the components that enable it to function, another form of energy production automatically comes into play. This does not depend on the presence of oxygen to function. Perhaps we can refer to it as the secondary (backup) engine. The function of this secondary engine comes into play automatically and is referred to as “the anaerobic threshold”. This form of energy is less efficient and causes a sustained increased in lactic acid and metabolic acidosis. A person may notice, for example, that when climbing steps the legs become fatigued but that after resting for a short while, recovery occurs. This is because the lactic acid generated in the muscles is consumed and normal oxidative metabolism is restored. It is much more noticeable in older individuals, because the efficiency of oxidative metabolism gradually declines with age. Undue or prolonged physical or mental stress requires huge amounts of energy to perform the essential adaptive response and may cause it to run out of one or more of the necessary components that are used in the primary “engine”.

Thiamine, Dyspnea, and Cellular Energy

Carbohydrate from food is broken down to glucose and converted to glycogen where it is stored in the liver. When any cellular activity is mobilized (e.g. a run in the park), an enzyme in the liver converts glycogen to glucose which is then oxidized (burned) as fuel. Fatty acids are also used as fuel and thiamine (vitamin B1) is the vital component for the oxidation of both fatty acids and glucose. Glucose is the only fuel used by the brain.

Muscle Weakness and Dyspnea

As already indicated, dyspnea is a common, disabling symptom in chronic heart failure. Weakness in the muscles used for breathing is important in the dyspnea experienced by some patients with pulmonary disease and studies have shown that patients with stable chronic heart failure have weakness in these chest muscles. The cellular energy deficiency that gives rise to dyspnea also gives rise to weakness in the muscles, thus aggravating the clinical situation.

There is a serious lethal disease known as Amyotrophic lateral sclerosis (sometimes known as Lou Gehrig’s disease) that leads to chronic respiratory failure from failure of the diaphragm (the large muscle that separates the chest cavity from the abdominal contents and used in breathing). This is a major driver of dyspnea and mortality. In this disease, energy expenditure is known to be often abnormally high and this may be an important observation. If energy expenditure exceeds its production, the deficit must be a cause of the dysfunction.

Energy Synthesis Versus Expenditure

I live in a retirement home and of course it is not uncommon to see people being pushed around in a wheelchair and being treated with nasal oxygen. The question that always occurs to me is whether the sole administration of oxygen is considered to be effective. The mechanism of oxidation requires oxygen of course, but proper fuel (glucose) and vitamin B complex are both necessities. If the patient is consuming a normal diet, the glucose will be available but there is generally nothing to indicate whether an adequate supply of B complex is part of that diet. Often sick people do not eat very well and I would insist on a supplement of B complex to such an individual if I were in charge.

Although ALS is relatively rare, if energy expenditure exceeds synthesis as the underlying cause, perhaps a method of accelerating its synthesis might be a logical approach and there is some precedent for approaching it this way. Without going into the technical details, redox (reduction/oxidation) is the technical word used to describe the essential reactions of oxidation in the synthesis of energy and I came across two manuscripts that suggest the need for research into thiamine metabolism in this disease.

Why Thiamine?

In our book “Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition, we describe the case of an eight-year-old child who had suffered from chronic asthma from the age of four years. She was so allergic to virtually any mattress that she had to sleep on a plastic lawn chair. The bronchial tubes are closed and opened under the influence of the autonomic nervous system (ANS), so asthma is really an example of dysautonomia (abnormal action of the ANS). This means that the bronchial tubes shut down abnormally, making breathing exquisitely difficult. The controls of the ANS in the brain are energy dependent and dysautonomia results from lack of energy in those control centers. The signaling mechanisms become distorted. Since thiamine sits astride the chemistry of energy production, this girl was given large doses of thiamine to which she responded dramatically. It is an example of drawing a logical deduction from understanding the actions of the brain when oxidative metabolism is compromised. I am not suggesting that large doses of thiamine would be beneficial to all cases of asthma, but I am suggesting that an imbalance of nervous control is responsible for a lot of poorly understood disease.

How We Got Here: The Flexner Report

In 1910, a study of American medical schools resulted in the Flexner report, written by Abraham Flexner under the aegis of the Carnegie Foundation. Many aspects of the present-day American medical philosophy stem from this report and its aftermath. Homeopathy and natural medicines were derided and some doctors were even jailed. Colleges in electrotherapy were closed. Flexner obtained his information by visiting Germany where the laboratory was supposed to prove the exact nature of the disease. It is this model that persists in America today, resulting in the collision between Orthodox and Alternative medicine (the use of nutrients to assist the natural process of healing by stimulating energy production). It is also the reason why Orthodox physicians refuse to recognize that abnormal electrochemical reactions in the brain are responsible for symptoms. Because they do not look for evidence of nutrient deficiency and the present standard laboratory tests are negative, they refer to the symptoms as psychosomatic. For many years it has always been a mystery to me why a patient with long-suffering problems of health can be accused of inventing symptoms “to hide behind some form of reality”. There is every reason to replace this idea with a mild disruption of brain chemistry as the underlying cause. It is also the reason why psychogenesis is included as one of the causes of dyspnea. The word psychosomatic should be abolished.

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Who Was I to Question a Doctor? Lessons Learned after Being Floxed

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I took an antibiotic called Cipro for a “suspected” kidney infection/UTI in November of 2016 and have been suffering from fluoroquinolone toxicity for over a year. I was only 30 years old. I say “suspected” because my urinalyis came back negative, as did my urine culture. I instinctively knew that I did not have a UTI because I didn’t have any of the common symptoms, I only presented with left flank and back pain. But, who was I to question a doctor? I would soon find out that not trusting my intuition was going to have catastrophic repercussions.

Before Cipro

Let’s back up and look at what was going on in my life that possibly set me up for fluoroquinoline toxicity. Five months before I took Cipro, I was in a car accident and had trauma to the left side of my body especially my rib cage and breast. I was a stay at home mom to a 7-month old that I was still nursing and a two year old. My husband worked 90 hours a week, and I didn’t have any family to help with my children as I healed from my injuries. Since I had experienced trauma and bruising to my breast, I developed chronic issues with mastitis, plugged ducts and breast pain. In attempt to keep my breast from getting infected and ducts unplugged, I nursed my son constantly throughout the day and night, every night. My body was exhausted, and I was completely run down mentally. I started having severe anxiety and panic attacks. I started drinking cappuccinos to help give me energy and keep me awake.

How does this relate to my fluoroquinolone toxicity? In the months leading up to this, I was under immense physical and mental stress that I suspect played a huge role in draining vital nutritional stores – not to mention my increased metabolic demands from lactation and two back-to-back pregnancies. People with high-energy needs, whether physical and/or mental, may be hit harder when a medication attacks mitochondrial energy.

The Downward Spiral of Being Floxed

Fast-forward to November 2016, I had been having pain in my side and back for a few days. I went to an ER clinic by my house and had a CT scan done to rule out kidney stones and other organs issues. They came to the conclusion that I had a kidney infection, and gave me a pain reliever via IV, which I thought was unnecessary, and prescribed me Cipro and Pyridium. I didn’t know anything about pharmaceuticals at the time and didn’t even recognize the name Cipro. No one mentioned any sort of warning of side effects or disclaimer about this drug at the ER or the pharmacy.

I went home and started taking the medicine. That night I could not sleep at all and thought that was strange. The next day I started having terrible burning during urination and thought, “This must be the UTI they were talking about!” It never crossed my mind that the burning could be a result of the antibiotic, so I went back to the pharmacy and got the Pyridium prescription filled.

Over the next few days, I kept feeling worse and worse. I even called the ER and asked about the results of my culture and if I should be put on a different antibiotic. They told me to just keep taking the medicine, and I would get better. I followed their instructions and continued. By the next week, I had developed severe vulvar burning. On my 10th and final day of my round of Cipro, I nearly fainted walking to the bathroom and truly felt like I was dying. I went back into the ER and told them about my severe vulvar pain and the fainting episode. The doctor performed a pelvic exam and tested me for STDs, which of course were negative. He didn’t even know the difference between the vagina and vulva, so that should have been a big red flag! He told me that his wife always gets yeast infections after taking antibiotics and wrote me a prescription for the antifungal Diflucan. I did not have a yeast infection, but out of desperation, went along with his rationale.

I went home and prayed that this medicine would help take the terrible pain away. That night, I started having strange sensations in my legs. It felt like something hot was running through my veins from the waist down. This terrified me, and I did not continue taking the remainder of the prescription. I have learned since then that antifungals like Diflucan can cause huge increases in oxidative stress.

The next few days were a total nightmare. I couldn’t eat. I couldn’t sleep. It felt like electricity was running through my body. I went back to the ER a final time and told them that something was seriously wrong with me and that it was like my body was out of control inside. The doctor asked me if I had a history of anxiety and wrote me a prescription for Xanax. I was offended and absolutely terrified. I left feeling completely and utterly alone. “This is NOT in my head,” I thought. Fortunately, I got off that medication merry-go-round and threw that Xanax prescription in the trash.

The next day I called a practitioner in my city that specializes in environmental medicine. I told him about the Cipro and my severe vulvar and urethral pain, and he brought up oxalate and told me to take calcium citrate and d mannose. I had never heard of oxalate before but was relieved that someone seemed to know how to help me and more importantly didn’t think I was crazy! It was Thanksgiving week, so I just kept telling myself if I could make it through the holiday, I would be OK once I saw the new doctor.

Contemplating Suicide: Cipro Poisoning is that Bad

By Thanksgiving Day, I was in such terrible pain physically and mentally. My ears felt full and were ringing. My eyes felt dry and irritated. I had peripheral neuropathy. My skin felt like it had been burned. My Achilles tendon and shoulder ached. It felt like someone had poured acid on my vulva and urethra. I would lie in bed an entire night with my eyes closed and not be able to fall asleep. At this point, I had gone days without sleep and could barely eat. I wrote letters to my children, emailed them to my husband and was making plans to kill myself. I certainly could not live like this and did not want my children to see their mother in this way. I emailed my new doctor (that I hadn’t met yet) and pleaded for help – keep in mind that this was Thanksgiving Day. His office wrote me back and told me that I could take dye free Benadryl up to 3 times a day for the irritation in my eyes and ears, arnica for the pain and sent a very comforting message. That was absolutely my saving grace. I definitely would have tried to kill myself if they would have not written me back. My plan became to take the Benadryl and just try sleep through this nightmare for the next few days until my appointment. I kept reminding myself, “If you can just make it to Monday…just survive until Monday.”

Monday rolled around, and I was hanging on by a thread. I limped into the doctor’s office first thing on Monday morning. I cried, no – more like bawled, for 90 minutes about how much pain I was in and how scared I was. He was incredibly comforting and compassionate. He listened, and he believed me. He told me the pain wasn’t in my head, it was real and to believe in myself. He reassured me that we would figure this out, no matter what, and that I would be OK. He gave me hope, which was the most important gift anyone could have ever given me.

The Power of Hope

I was so lucky to have a person in my corner that believed in me from the very beginning. If you are not as fortunate as I was, let this story be that for you. You will get better. You will be OK. Say it to yourself over and over and over, and truly believe it. “I’ll believe it when I see it” can be turned on it’s head into I’ll see it when I believe it. It’s not going to happen overnight, but you can find healing. The path is not linear; it has many ups, downs, and devastating setbacks. Many times, I would make huge gains and then seemingly overnight, feel like I was back to square one. Have I always made the “right” decisions? No, of course not. I have followed advice that has set me back many times. I have cried myself to sleep for weeks and weeks. I have been in so much pain that I have gotten my husband’s pistol out and held it to my head more times than I want to admit. Despite all this suffering, God has been so good to me. He has guided me on a path towards healing and has made me a better person through this experience. I no longer take my life for granted and feel as though my eyes have been opened in an incredible way. I am not completely healed, but I am living a full and happy life – and learning more and more everyday. So, what have I learned?

Surviving Fluoroquinolones

When I first started writing this, I was going to share every nitty gritty detail, but it was turning into a novel. I think people are less interested in hearing about my struggles and much more interested in learning what helped me feel better. I have experienced dozens of symptoms over the course of the last 14 months. The vulvar pain has been so severe at times that I was suicidal. I developed sensory issues with my ears that brought me to absolute despair. Everything was so unbearably loud that I had a difficult time going out in public. I would go to the grocery store and could hear a thousand different noises all around me. My heart would race, and all I wanted to do was scream and run away. It was overwhelming but made me empathize with autistic children that have complete meltdowns in public. For about 2 months, I had issues with my eyesight and couldn’t drive at night at all. For 4 months, my hair fell out in huge clumps to the point that I was scared to brush my hair or take a shower. I developed thyroid issues and was freezing cold all the time. This list goes on and on and if you want to know more, you can leave me a comment. For now, I’ll recap the things that helped me in chronological order. It’s important that I list it from the beginning to present day because of the way it led me to learn new things.

My Path to Recovery: Nutrients and Diet Matter

December 2016: The first protocol I was put on by my new practitioner was a gluten free/dairy free/sugar free whole foods diet. Food allergies and sensitivities can be causes of inflammation, so it was important for me to address these since I was trying desperately to heal. I lost 20 pounds in two months and my chronic rhinitis went away. Earlier in my story I mentioned oxalate. Oxalate is a toxin that occurs naturally in most plant foods but at very different levels – some low and others extremely high. For example, arugula is low and spinach is extremely high. You may have heard about oxalate before in reference to kidney stones, but we know from research that oxalate can go virtually anywhere in the body, not just the kidney. To complicate matters more, your body can make oxalate endogenously when deficient in vitamin B6, thiamine (B1) and/or when in oxidative stress. This is a big piece to my health puzzle that I didn’t understand at the time, so I did not focus on learning about it until a few months later. My practitioner only told me to take calcium citrate to “bind” to dietary oxalate and didn’t think it was necessary for me to do a low oxalate diet. Gluten free diets can unintentionally become high in oxalate, so I just wanted to make this note.

Recognizing and Fixing Nutrient Deficiencies

I started working towards boosting my vitamin and mineral deficiencies. Blood tests revealed that I was deficient in magnesium, vitamin D and B12. I started giving myself B12 injections every 3 days. This helped tremendously with lifting fatigue and giving me energy. I also began taking glutathione (liposomal), which is your body’s master antioxidant. It is an expensive supplement that I took for several months but could always tell that it helped to support my liver.

Blood tests revealed low thyroid levels. Interestingly, the thyroid can be used as a marker for adverse reactions as it is almost always attacked – a canary in the coal mine if you will. I learned later that the thyroid and thiamine share a reciprocal relationship. When the thyroid is suffering, mitochondrial damage is common and thiamine is low and vice versa.

I was having issues with my eyesight and painful dry eyes. I went to an optometrist and everything checked out to be fine.

January 2017: I had a stool test done that showed I had bacterial dysbiosis and was low in short chain fatty acids like butyrate. Not surprising after taking an antibiotic like Cipro! I recently read a fascinating study about how exercise can boost butyrate. Another reason exercise is good for us!

I was having severe vulvar pain, so I decided to “step up” my diet and try autoimmune paleo (a stricter form of paleo) along with avoiding high oxalate foods. I unknowingly was still consuming a diet high in oxalate.

I went to an OBGYN to be examined, and she did not think that the vulvar pain was related to me taking Cipro. (Eye roll.) My pap came back normal and a secondary test for HPV came back negative. However, I tested positive for a mycoplasma called ureaplasma urealyticum and showed no growth for lactobacillus (which is associated with microflora instability and suboptimal vaginal health.) I was given a prescription for doxycycline but was too afraid to take it.

I also began having sensory problems with my ears and was having continued struggles with tinnitus.

February 2017: I had a urine test done that showed I was deficient in vitamin A, vitamin E, alpha lipoic acid, thiamine (B1), riboflavin (B2), niacin (B3), pyridoxine (B6), magnesium and glutathione. It also showed that I had high levels of lipid peroxides indicating oxidative stress.

I used a holistic protocol to try and get rid of the ureaplasma, which included taking high dose vitamin C multiple times a day amongst other supplements. I continued taking 2000mg a day thereafter in hopes of boosting my immune system. After about 2 weeks, I developed a burning, stinging type nerve pain in an area that I had had shingles a few years ago. I learned later, that the problem with high dose vitamin C during oxidative stress is that after it is used, the product of those reactions is dehydroascorbic acid. Ascorbic acid is converted into downstream products once it becomes dehydroascorbic acid. This would include 2,3-diketogulonic acid, which is converted into oxalate without needing an enzyme. So maybe high dose vitamin C isn’t as innocent as we all thought?

At this time, I couldn’t wrap my head around oxalate and wasn’t convinced it had anything to do with me. I started eating extremely high oxalate foods on the autoimmune paleo list.

I went to an ENT and audiologist for the issues with my ears and everything checked out to be fine. It wasn’t fine, but I was used to doctors telling me that everything “looked fine” by now. The ENT thought my aural fullness was due to allergies.

March 2017: I was not doing well and felt worse than ever. My vulvar pain was excruciating, and it felt like I was urinating razor blades. My skin looked terrible. I was fatigued and spent most of the day on the couch watching my kids play. I decided that autoimmune paleo was not the answer I was hoping for and realized I should start looking back into the oxalate issue more.

I went to an urogynologist to get another opinion on my vulvar and urethral pain, and he also thought the ureaplasma was the smoking gun. He prescribed me doxycycline, but I just could not bring myself to take it. If ureaplasma was the sole reason to my pain, why does it wax and wane so much? I needed more information and starting digging through PubMed.

Blood tests showed that my thyroid levels were getting worse.

I saw my new primary practitioner (the nice one that believed me) and began getting low dose allergen immunotherapy shots.

April 2017: I was discouraged that my problems were getting worse and started to make plans to end my life again. I was going to try a few more things first and began another holistic treatment for the ureaplasma. Instead of trying to kill the mycoplasma, I tried boosting my lactobacillus. It seemed to work somewhat as it decreased the number of times I needed to urinate a day/night. What I did realize is that supporting my defenses, such as changing the terrain, seemed to be more effective than the conventional approach of trying to kill, kill, kill.

I started taking a mega dose vitamin B-complex transdermal patch.

After researching more into the oxalate issue, I decided to start a low oxalate diet and began reducing my oxalate intake slowly. I immediately started getting pain relief, which kind of blew my mind. It is highly recommended that you start this diet slowly to avoid “dumping” oxalate from your tissues too quickly which could lead to very uncomfortable symptoms or even a metabolic crisis.

I began to get hive like rashes on my legs.

I started taking quercetin to combat histamine/allergy symptoms and inhibit inflammasome activation. Although research supports many benefits of taking quercetin, I found out a few months later that it is a thiamine inhibitor. Taking high doses of quercetin, multiple times a day, is NOT a good idea for someone like me with thiamine issues.

May 2017: Things began looking up. I still had vulvar and urethral pain most days but the pain was less severe. Some days I had no pain at all! This led me to start being able to live a much more active life.

I had, what I presume to be, my first “dumping” of oxalate experience and had widespread, all over burning pain. I learned that increasing minerals like magnesium and taking Epsom salt baths can help with “dumping” symptoms.

My hair started falling out in huge clumps.

I went to my primary practitioner and got a second round of low dose allergen immunotherapy and a prescription for thyroid medication.

June 2017: I had a bad reaction to the thyroid medication. It gave me terrible chest pains, so I did not continue.

I had a two-week stretch where I felt really good. I was used to having more bad days than good (actually, in the beginning, it was all bad days), so I was elated to see such improvement. I thought I could go back to “normal” and started enjoying summer time treats like coconut ice cream and having a few tequila cocktails. Sugar and alcohol are big no-nos when dealing with thiamine deficiency.

July 2017: I started developing neurological symptoms. My left foot was numb, and I had burning and tingling in my hands and feet. I felt really strange and out of it. I even couldn’t remember my own son’s birthday.

I started getting a hive in the exact spot of the injection site of my allergy shots almost every day.

I had blood tests done that showed low white and red blood cell counts. I continued to have low thyroid levels, although they looked better than they did in March.

I had developed a friendship with oxalate guru and researcher, Susan Owens, and asked her to look at some of my previous lab work. She was concerned about my thiamine status for many reasons, and after noticing that I had elevated alpha ketoglutaric acid, was seeing a possible connection to endogenous production. There is plethora of research on vitamin B6, and it’s relationship with endogenous production of oxalate (here and here) because of its association with Primary Hyperoxaluria Type 1. It’s not as clear what role thiamine plays in endogenous production. There is a limited amount of research on thiamine dependent enzymes that help to prevent us from making oxalate. I haven’t done an Organic Acids Test to see if I have any markers indicating endogenous production, but I do know from my previous urine test that I am in oxidative stress. We know from research that humans do produce oxalates endogenously when under oxidative stress. In conjunction with a low oxalate diet, addressing oxidative stress is an important part of the approach in reducing oxalate issues.

I started researching thiamine deficiency, and it led to me to Hormones Matter. After reading all of Dr. Marrs‘ and Dr. Lonsdale’s articles, I was having light bulbs go off left and right. There was a specific piece written on beriberi that I was like THAT’S ME! I do not know if my thiamine issues are related to endogenous production of oxalate, but what I do know is that I have thiamine deficiency disease also known as beriberi.

August 2017: I tried taking Benfotiamine, a form of thiamine supplement, and had terrible chest pains. My chest hurt to the point that I thought I was having a heart attack. I reached out to Dr. Marrs who is a thiamine expert and asked if this was a normal reaction. Chest pains are common in people with a longstanding deficiency but due to the way they are metabolized, some forms of thiamine are tolerated better than others. Dr. Lonsdale wrote an article about the different forms of thiamine supplements, so I decided to try one that he recommended called Lipothiamine. Lipothiamine crosses the blood brain barrier, so you get the positive effects of thiamine both inside and outside the brain. Another unique attribute of Lipothiamine is that it does not require the thiamine transporter protein that enables the absorption of thiamine into cells. If you have any genetic defects in these transporters, which I highly suspect I do, then this is a great option for you. Side note – a family history of alcoholism can cause issues with thiamine transporters. Looking into your family’s health history may be helpful in putting pieces of your puzzle together.

After starting Lipothiamine, my whole life changed. Not to mention my hair stopped falling out! A reoccurring thought I had been having on this journey was, “Why does life seem so hard for me when everyone else makes it seem easy?” Lipothiamine made my life easy. It was no surprise to me when I read that beriberi literally means “I can’t, I can’t.” With thiamine supplementation, I was able to live a fully functioning life for the first time in a very long time. Over the next three months, I was able to start going to a bible study, church, yoga and meditation classes, counseling and able to get a part time job on the days my children go to school. It was absolutely life changing.

I did have to experiment with my dosage. I started out taking 50mg and moved up to 100mg the following week. I started having intense burning in my legs and feet, so I moved back down to 50mg. I suspect that this triggered dumping of oxalate, but that’s just a speculation based on the experience of others. Magnesium is cofactor for thiamine, so it’s important to take enough magnesium for thiamine to work properly.

September 2017: After 6 weeks of taking Liptothiamine, I had some blood work done. My thyroid numbers were looking much better. I was ecstatic to see such improvement in my thyroid labs without taking medication. Things were moving in the right direction except that my absolute eosinophils were high.

October 2017: I was getting stronger and able to start practicing yoga multiple times a week. I was seeing huge gains in health and happiness from working out.

I was still having burning sensations on and off.

I started seeing a medical massage therapist. Each session gave me temporary pain relief from the neuropathy and helped me overall feel better.

I started having consultations with Monique Attinger, the Low Ox Coach. She is an oxalate and nutrition expert and moderator of the Trying Low Oxalate Facebook Group. I wish I would have had sessions with Monique from Day 1. She is extremely knowledgeable on this complicated issue. She helped me navigate through a lot of anxiety I was having regarding food and eating out.

November 2017: I joined my husband on a work trip to the mountains for five days. I had been feeling good and thought this could be a great opportunity to celebrate our anniversary after a very difficult year. I was doing OK for the first few days but could definitely feel the effects of the altitude. On the third night, I started to feel like I was having difficulty breathing, almost like a suffocation feeling, even though I was breathing normally. I experienced the same air hunger sensation on the following night and begged my husband to drive me down to a lower altitude. On the fifth day, I flew home but was still having strange symptoms – even though I was back down to almost sea level. I continued to have air hunger that waxed and waned and had thick brain fog. It felt like my brain was broken, and I couldn’t think at all. I also noticed changes in my speech and felt myself tripping over words at times. This setback lasted for a few weeks and was absolutely devastating to me. I cried and cried and was discouraged at the thought of having to start over after so much hard work and progress. While in the mountains, the altitude acted as a stressor, and my body didn’t have reserves yet to respond to any stressors. The air hunger comes from the brainstem as an autonomic reaction. I found a study showing that mice needed 4x’s the supplementation of vitamins at high altitudes in order to normalize processes. So, I actually needed to be taking much more thiamine than normal.

I started my new job despite not feeling well.

December 2017: I had a busy month working, parenting and keeping up with the holiday festivities. The magic of Christmas kept me positive, and I started to recover from my setback.

I was still having the widespread burning on and off and had some numbness/tingling in my foot.

January 2018: So, here we are back to present day. Overall, I’m doing really well and am trying to take things a little easier after a busy holiday season. I am not completely symptom free, but I am tremendously better than I was when this journey started. Most importantly, I am happy. I currently started supplementing with a transdermal vitamin D patch. Vitamin D is the backbone of the immune system, and I am not getting much sun lately with the cold weather. There are a few more supplements that I am interested in trying like riboflavin, biotin, vitamin A, MSM and MitoQ.

In closing, I hope that my story can help spread awareness of the dangers and devastating effects of fluoroquinolines. I’m still learning new things everyday and am hoping to someday be better and healthier than I was before Cipro. I have had a funeral for my old life and am slowly finding a different and better me. I am taking this injury as an opportunity to love more deeply and hoping to help others through my experience. My best advice is to always trust in yourself, do the best you can with your nutrition, and take your thiamine. Give the rest to God. If you believe in your inner strength, you’ll see it every time you face a crisis.

For more information on oxalate and the Low Oxalate Diet, please go to the Trying Low Oxalates Facebook group. Susan Owens has provided all of her research in the files section, and the moderators and members are wonderfully helpful.

For more information on thiamine, please read the articles by Dr. Marrs and Dr. Lonsdale on Hormones Matter. They have also written an incredibly informative textbook called Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.

Thank you to God and all of the amazing women researchers that helped me find healing.

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